[enrico]

Hi there everyone
I post here because lately i've been thinking a lot about my relationships with people, and especially with my family, after my diagnosis 1 year ago.
I think people really find it difficult to understand lupus and this is really frustrating. but I also experience another difficulty: I manage quite well to cope with lupus, I am an optimist, a positive person and, thank god, i am happy and i love my life, but my mother keeps telling me that she considers my being "happy" as a way to give up trying to find new solutions. She doesn't want to believe that there's no definite cure for lupus and would want me to see a different doctor everyweek. Of course lupus has changed my life, but i find this exausting: i don't want to have false hopes.
what do you think?

 

[karen.w.]

hi enrico

I was wondering..do you think your mum is reacting this way because it's her way of coping with your illness?
maybe by believing there is a cure it helps her to deal with it?she might not be ready to accept it yet?

sorry I don't mean to diminish how you feel & it must be very frustrating for you...have you tried talking to her about how you feel?
my husband also believes that there is a cure just around the corner & is never satisfied with my doctors......he is very understanding & supportive in every way but he is too optimistic regarding my health,he truly believes I wont get any worse in the future unless he just says that for my benefit

enrico I would try talking to your mum...hopefully she will 'come round' to your way of thinking eventually.
I am glad you have such a positive attitude it certainly helps!!

take care...karen x

 

[lupie lou]

Hi There
I can see where you both are coming from, I to have a over-protective Mum... But as a mum I can also see her view It sounds like she is still in denial about your Lupus! Mabe she could read some books ect (not old ones) Every body wonts the best possible care for our familys and as long as you have a good Lupus docter that should reasure her!
It does take time for Familys to come to terms with our Lupus as it does effect those around us just as much too....
Hope it sorts it self out soon
Love Lou xx

 

[LolaLola]

Dear Enrico, I have Lupus and am Mother to my Daughter with Lupus so I can perhaps see both sides. Having a sick child, even a grown up one is not easy,but I have to say I thoroughly agree with you about not chasing after a so called miracle cure. You need to use your energy for what is important to you. It is good that you can be realistic.
Best Wishes to you and Mum,
X Lola